How do you know if you have NeroBehcet’s? I am female and my dr. says I don’t have to worry about it because I am female. But I am having some of the symptomms, the numb feeling in my hands and feet, pins and tingles in my legs and really bad headaches that make my migraines look like a very minor tension headache. Also I am having trouble regulating my body temp. Is this related to BD? I live in Alaska and while my doc is a good one she is a GP and is doing her best but doesn’t really know what to do with the symptoms that don’ t fit the standard BD. She has run every test she can think of and everything keeps comming back normal. What is going on with my body!!!
Denise
I have just joined this group - but I want to share my story in hopes that it helps.
I was diagnosed 14 years ago - by fluke by a fresh resident who had remembered her text book description. For 7 years I struggled with Neuro Behcets - headaches, body pain, meningitis, numbness, slurring, as well as all the rest - I had two blood clots shortly after one another, eye inflammation, arthritis, digestive problems.
My body was not my own - I thought I was going crazy - and could NOT imagine spending the rest of my life with this disease.
So women certainly can get NB - and symptoms vary. And the most frustrating part of the disease was the doctors’ insistence that they knew what was going on in my body better than I did.
I have been in remission for seven years. My body is perfectly healthy now and although I have small dips - where I get some of the old symptoms - I am able to control it.
I wanted to tell all of you - that it is possible to feel better - and if you doubt it - then I understand because I doubted it to. But it will not get better by relying on your doctors.
It has to be up to you to search for what your own body needs - for me I found stress was my biggest trigger so made changes to my lifestyle, removed wheat and dairy and generally revamped how I feel about myself.
Sounds too simple to be true doesnt it? I understand that to - because I never believed it either - I was so desperately hanging on to prednisone, leukeran, metheltrexate cocktail to save me.
I hope all of you feel good soon - and I hope you can use this terrible disease as a journey to make your life better.
Shannon
Thank you for your insite. I have noticed that for the most part while I still have all my symptoms they are less sever since I quite my job.(I was a schoolbus driver, talk about high stress.) Do you have any advice on how to get my doc to listen when I tell her my symptoms? She hears when I tell her about the mouth and genital sores the skin leasions, etc. but doesn’t want to hear me when I tell her about my headaches (they are so sever I wish for migraines) or the numb patches on my legs, or, the fact that I don’t feel hot or cold on my hands or feet anymore, I am having trouble saying what I mean,( I think one word and say another)and so on. I don’t really have a choice of finding a new doc as I live in Alaska and not many even know what BD is let alone how to treat it. Also I am trying to find a nutrition speacialist to try and figure out what foods will work best for me and my BD. Any oter advice you can think of would be greatly appreciated, Thanks again, Denise
Denise,
Stress is defintely a trigger for flares, and you will
know when your body is talking to you, and when to
slow down.
As for getting your doc to listen to you, first, don’t
give up. I went to 14 docs before an actual diagnosis.
What helped the most was starting a “journal”. Daily
is really good, however, weekly would be fine. All
your symptoms, your meds, your moods and reactions to
treatment, fears, etc. I did this and gave it to my
doctor. She finally understood the enormity of the
situation, and how it had begun to affect me mentally
- the constant pain, that something was very wrong and
I wasn’t getting any help, a real cry for help.
If you look at a doctors life, it’s like one big
serious complaint dept. Eventually everyone sounds the
same after a while. So set yourself apart, - it really
helps to notice patterns and frequency of flares,
headaches, and progression or remission of the disease
- very important to getting the right care and
treatment. Start researching on the computer - look
for rheumatologists, neruologists, dermatologists that
might be familiar with this disease. Call them if
travel isn’t available, at least they can lead her
(your GP)in the right direction for possible
treatments. Remember, if you’re seeing a GP, they can
be lifesavers, but not well versed in specialties. If
she’s willing to confer with another doctor by phone
concerning your treatment, even better.
I set my GP, eye doctor, gyno, and rheumy up in a
network style, that way everyone knows if something
should happen, everyone is a phone call away.
You might try going to the Behcet’s website, the ABDA
and calling them for advice on where to look. They
have a doctor registry, but will honestly try to help
you find the care you need or at least point you in
the right direction. Remember above all, your health
is the most important, you don’t have to suffer, and
what you don’t take care of now may make you pay a
higher price later. Don’t take no as a final answer,
and don’t give up!
We’re all cheering you on!
Jamie
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Thank you for you support. I finally found a ruhmy who knows what behcets is and have an appointment in July. I am going to ask him if I have neroBD as I can’t get a straight awnser out of my other docs. I have also started a symptom calander at the advice of my mental health counsiler and I plan on bringing it with me to the appointment. I can’t think what else to do right now it is getting steadally harder to consentrate and remember the little things I think because of the headaches, also Mono is going around the area I live in and I think I might have that as well I have an appointment with my gp to do the tests for that. I really don’t know what else to do. any more advice anyone has would be great. Thanks and best wishes to everyone, Denise